I don't do mornings.
Well, not early mornings. Except when I do. And that's when I really
really feel like it (rare) or when I have to (not rare enough).
Doesn't it always catch up with you when you've had to function day
after day out of your natural rhythm? That's what happens to so many
children with ME whose families I deal with. Tutors insist on
arriving at 9.30am. Doctors' appointments are made for 9.30am.
Schools want the child back in class by 9.30am. What is so morally
correct about 9.30am? Maybe it's a throwback to the old nursery
rhyme: 'Early to bed, early to rise, makes a man healthy, wealthy and
wise.' Unless you've got ME. Then it doesn't. Due to a dysfunctional
hypothalamus gland, wise is just about the last thing it is for most
of us.

It shows on our faces,
if people would only notice. It shows on the children's faces. Panda
eyes. Skin sometimes white as a ghost. Not the blooming face of a
healthy child at all. Why can't people see? Look, guys, look at the
children. And have some compassion.

What sparked off this
thought was seeing my on-screen face in my latest media interview on
ITV Anglia. Surely not? That's not how I looked in summer, relaxing
in the garden room (which used to be a conservatory, but it leaked –
that's another story). I dug out this selfie on my phone – the one
I know how to use, in contrast with my lovely new one, which I can't
get the hang of. (Can anyone with ME get the hang of a new mobile
just like that? I tried out the alarm function and had to text my son
to ask how to stop it going on and on and on and on... Then I did a
test call to my landline but couldn't find out how to end it. I was
mortified to hear myself muttering in frustration on my own
answerphone, until BT decided I'd gone on long enough.)

So I found the summer
photo. I was right. Not haggard or ill. Relaxed. Just a few of those
friendly 'I'm not so young as I used to be' signs of time, but
nothing like the apparition on the TV. Yes indeed. What we do is
written all over our faces. Too much effort? Haggard and ill.
Whatever the hour (even when the dreaded morning is over and we're
well on through the day) too much effort always shows. Haggard and
ill. However bright as a button we try to act (even though we
collapse later) it stares back at us from the mirror, or in this
case, from the screen.

And then I listen. Nice
little news feature, but I seem to have been cut off mid-sentence.
[Sigh: those recorded interviews. It's always the editing. I much
prefer live.] In 1996, in the original ME – The New Plague I
wrote: 'Now we see ME called Chronic Fatigue Syndrome, muddying the
waters yet further, for this is a wide umbrella term that includes
cases of fatigue-inducing conditions that are not true ME at all'.
For many years both I and Tymes Trust have insisted that ME should be
separated from the disastrous umbrella term of CFS. We published this
call in our 2007 appraisal of the NICE Guideline (just republished in
ME Briefing – not NICE) and we are still repeating it. What
many people derided us for ('Oh no, that'll never happen') has
already borne fruit internationally and in the UK too.

My ME – the New
Plague 2, serialised on this site, opens by examining two
examples of the media coverage I've been involved with. I have tapes
and disks going back, way back. If you haven't read those episodes,
or want to remind yourself, you've just got time before the third one
is published. There's been an inevitable time-gap due to the volume
of charity work and speaking commitments, but now I'm back to the
keyboard folks, and we're off and running.